Cathy Fooks

There’s broad agreement that integrated healthcare serves patients better, eases the burden on caregivers and improves system accountability and efficiency. There are excellent examples of it in many countries and multiple efforts to create it here in Canada. Yet progress toward it remains frustratingly slow.

Our idea was to create a kind of learning lab: over the meetings, the same group of Ontario health-system leaders would hear from experts on how integration is developing in other countries. Their responses to the first discussion would shape the second, and the third would build on that. We’ll have more complete articles coming out about the discussions, but I wanted to share briefly the gist of our September meeting.

Chris Ham, chief executive of England’s King’s Fund think tank, was our guest speaker at the first session. He opened his remarks by showing a video the King’s Fund uses to illustrate the concept of integrated care. It’s a useful primer, but by now the concepts of integrated care are well known, without being well-used.

That failure to spread, according to Ham, is because the vast majority of attempts to integrate care go about it the wrong way. Successful integrated care, he said, is fundamentally about people and their families and carers—how we can best meet their needs and how we can give them the skills required to focus on relationships. Our efforts tend to flounder because we forget that, and focus our energies on institutions, professions and jurisdictions, as Ham illustrated in this slide:

It was easy to recognize the point Ham’s slide was illustrating: we’ve all been part of the strategizing and planning the column of technical challenges represents. Our efforts to integrate healthcare often, perhaps usually, boil down to debates over affordability and territory.

In a strongly centralized, government-controlled system, that’s no surprise. Healthcare is structured around budgets and institutions. But that is Ham’s point: it should be about people. People are not technical challenges. And that’s why successful integration shifts the focus to the second column, relational challenges.

That simple list was clearly revelatory for the people at the meeting. The idea that we need to focus on systems and collaboration to transform healthcare is not new, of course. What caught people’s attention was Ham’s firm belief that government needs to “stay out of the way” and let local groups draw on and build relationships in order to make care work for the people in their area. More specifically, government should create the right environment to allow local organizations to come up with the right solutions for them based on their populations, culture and resources.

Ham’s recipe for success, based on what he’s seen so far, suggests integrated care cannot be introduced in a system-wide, top-down way. The best efforts he knows start small scale, in neighbourhoods or communities, perhaps serving as many as 30,000 to 50,000 people. Small enough, in any case, that providers are used to working together, and building links among services is not too unwieldy.

Ham’s first example of that small-scale personal approach was the remarkable shift to integrated care in the English retirement area of Torbay. Change there was triggered by a failing grade given to the town’s social services system by government inspectors, he said, but the change itself was not dictated by government; rather, local healthcare providers, led by family doctors, got together to improve their patients’ lives.

He also described how the District Health Board for Canterbury, the region surrounding Christchurch on New Zealand’s South Island, undertook radical changes to its care services beginning in 2007, when demand on the system was mounting to the point where it looked unsustainable.

Key to that success, Ham said, was Canterbury’s close-knit community, where people already knew and trusted each other. But it was also about true and meaningful engagement of those who would have to implement the change at the frontlines. He believes real change cannot be dictated or transactional — it must be bottom up and developed at the person-to-person level. I’d add that it must also involve patients and caregivers to be meaningful, which is an aspect of engagement Ham admits has often been neglected.

Ham added a caution as he described these successful examples of integrated care. Because it depends on relationships and local community reality, he said, there is no single right way to do it, and one community’s successful model cannot simply be grafted onto another community. We should not look for shortcuts.

Often, it takes a spark — a burning platform – to make transformational change in our healthcare system. When there’s a lack of a major crisis or tragedy, there’s often the lack of wherewithal or ability to upend the status quo. So I wasn’t surprised to hear how concerns about a failing social services system was “the burning platform” to integrate health and social services in a small town in England.

It’s an expression you hear all the time when people get together to talk about improving healthcare. We need a burning platform, someone inevitably says, then we could get something done.

While it’s true a crisis often drives reform, it’s a pretty grim metaphor — do we really want to achieve better care in the future by having things spin out of control now? And what are we saying to people who are struggling with the system as it is when we imply regret that in Canada we can’t seem to manage anything worse than a smoulder?

Discussions often centre around what some Ontario organizations are doing to promote integrated care, or how badly the system is failing to deliver it for some patients. But the more I thought about it, the more I wondered whether it’s the right metaphor. We can debate whether Ontario has a burning platform in healthcare but the visual for me is different. I think what we have is a cracked foundation: somewhat hidden and getting worse.

The last decade of policy “reform” has focused on better integrated care across multiple access points – primary care, hospitals, home and community and long term care. No one is arguing we have achieved success yet. But, it’s clear the emphasis is on living longer at home and in the community, with proper support. This hasn’t completely arrived and the cracks are beginning to show, particularly as the load for basic care is shifting to families and friends – supported or not.

At The Change Foundation, we hear this again and again in speaking with caregivers and providers. Caregivers talk about increasing levels of stress and burnout and providers recognize people need support but don’t know how to access it and don’t have time to research local resources – if they exist.

The thing about a cracked foundation is that it’s easy to ignore even though the homeowner knows it’s there. You may choose to do nothing about it, but you know the house is crumbling. The floor sags, doors won’t close, lines creep across the walls, yet the house keeps standing. Until it doesn’t.

At the Change Foundation, we are working to change this. Four Changing Care teams are working directly with their family caregivers and their professional staff to fix that foundation. We are looking forward to showcasing their innovations. Some simple fixes perhaps but necessary repairs.

IFIC’s mission is to develop an international network that crosses organizational and professional boundaries to advance the science, knowledge and adoption of integrated care policy and practice. They do this through the development and exchange of ideas, and we are pleased to add our voice to this chorus.

In this role, Jodeme will seek to support and grow the work of both IFIC, and The Change Foundation, internationally.

In particular, Jodeme will be working with IFIC to advance the exchange of knowledge, information and practice to improve the caregiver experience globally, and to facilitate collaboration between Ontario, Canada and IFIC. Her role will be to advance integration by building and co-developing new lines of work related to a focus on patients and caregivers as partners with health service providers.

Through direct engagement with caregivers and health care providers, the Foundation has designed a program of work that we believe will improve the caregiver experience in Ontario and support health care organizations in working with the families of the patients they serve. Through our partnership with IFIC, The Foundation can serve as a model for others. Just as importantly, we will use this opportunity to learn from others and bring fresh ideas home with us. It’s by joining this type of international community that we’re able to keep learning and growing.

In our 2011 report, Winning Conditions to Improve Health Care, we predicted that it was “likely that some reorganization of LHINs and CCACs <would> occur.” From our perspective, we believed that reorganization would be “a huge opportunity to better align decisions and resources with priorities and purpose.”

This opportunity is now here. As of June 21, 2017, the CCACs have merged with the LHINs across Ontario. Although we all agree that change was and is needed to integrate care and improve patient and caregiver outcomes and experiences, we also know that structural changes alone won’t do the job. Ontario needs a fundamental shift to embrace patients and caregivers as partners in healthcare. Merging organizations is just a small piece of the puzzle.

Around the time that the LHINs were created in 2006, The Change Foundation looked at how integration was being done around the world. That research helped us identify key elements that are critical for integrated care. We have highlighted those elements in our work over the past few years. They are:

Include and value patient and caregiver perspectives

Provide seamless care

Pay attention to relationships, not just governance structures

Funding should follow the patient

Performance management should be linked to patient outcomes

Information management needs to be integrated and accessible

In our view, many of these foundational elements still need development in Ontario. The goal of an integrated system of care, which will lead to improved outcomes and better patient and caregiver experiences, doesn’t come about without a wholistic approach to change.

Take the Partners Advancing Transitions in Healthcare (PATH) project in Northumberland, as an example. PATH was a partnership between patients, caregivers and 12 cross-sector health care organizations in Cobourg. By co-designing the approach to care, based on patient and caregiver experience and input, they designed changes to improve people’s experience moving within and across health care organizations in each patient’s healthcare journey. There was a notable cultural shift in Northumberland—within health care organizations and the community—that is still evident today.

More recently, as part of our Changing CARE initiative, the Change Foundation is collaborating with four partnerships in Ontario that will change the way care organizations, providers, caregivers and patients work together. This shift will be achieved by developing programs and resources that address four areas of caregiver needs—Communications, Assessment, Recognition and Education—identified through extensive engagement and partnership with caregivers and providers. Most importantly, each of the Changing CARE partnerships demonstrated a true commitment to co-design with caregivers, and a passion and dedication to make meaningful change. They ‘get’ it. Yes, a structural change will be part of their implementation, but it won’t be the driver of the needed cultural shift.

When we look across the system, we are encouraged by the more prominent role that caregivers are playing in Ontario’s health care landscape today compared to 2006. As we said in Winning Conditions, “To accomplish [an integrated health system], we need to seek and be guided by the lived and expressed experience of the people now navigating the health care system.”

Although there is work to do to get more of the fundamental pieces in place to support caregivers within the system, we have begun tapping into their expertise. As the positive momentum continues, we are hopeful that the recognition and awareness of the role of caregivers will continue to grow among Ontario health care organizations and providers. It is only when patients and caregivers are true partners that we’ll be able to achieve true integration.

In April, the spotlight was shining on family caregivers more than ever before. April 4 was Family Caregiver Day and a number of appreciation events were held to recognize the vital role families play in caring for a family member, friend or neighbour. In fact, for the first time ever, this day was recognized at the national, provincial and municipal level. Later in the month, the Ontario government announced new supports for family caregivers through increased funding for respite services, more education and training programs for family caregivers, a new Ontario tax credit, as well as the creation of a new organization to coordinate supports and resources for caregivers.

These initiatives are definitely welcome. They represent a step forward in recognizing this vital role, giving caregivers a bit more time away from their caregiver responsibilities, and providing needed and necessary information and training.

But, is it enough? We don’t think so. Our direct engagement with family caregivers, and health care providers and staff tell us a more fundamental shift in thinking is required. Caregivers spend a lot of their caregiving time interacting with the health care system on behalf of their family member. Whether it’s chasing down information, coordinating appointments, or trying to convey vital information about the patient or the patient’s wishes, it can be time-consuming, frustrating and stressful. More access to respite or offering of education to caregivers, while important, does not change the fact that the system itself does not, by and large, value or acknowledge the caregiver role. Policies and practices in health care organizations often actually preclude caregiver involvement in patient care planning. To add insult to injury, busy staff often make assumptions about a family’s capacity to provide support without having a discussion with the caregiver to assess their willingness, ability and availability. And the evidence shows, when caregivers are not valued and supported, they burn out, become isolated, or they themselves become ill.

We are setting out to see if things can be done differently–we believe they can. Our Changing CARE work intends to do just that–change care and the caring experience for the caregiver. Since late January, we’ve announced four Changing CARE projects:

Connecting the Dots…Smoothing Transitions for Family Caregivers (Huron and Perth counties)

Partner Organizations: Huron Perth Healthcare Alliance; One Care Home and Community Support Services; North Perth Family Health Team; STAR Family Health Team; South West Community Care Access Centre; Southwest Local Health Integration Network

Embrace (Cornwall)

Partner Organizations: The Cornwall & District Family Support Group; Cornwall Hospital, Community Addiction and Mental Health Services

Improving CARE Together (London)

Partner Organization: St. Joseph’s Health Care London

Cultivating Change: The Caregiver Friendly Hospital and Community (Toronto)

Partner Organizations: Sinai Health System and WoodGreen Community Services

Through these projects, we are working directly with eleven partner organizations, but the reach is much broader when we look at all the collaborative work planned as part of each project. You can read more about the projects, and what they hope to achieve in the coming years, in Genevieve Obarski’s article Creating New Linkages.

April was also a busy month at The Change Foundation, as we welcomed Jodeme Goldhar, Executive Lead, Strategy and Innovation to our small but mighty team. In this role Jodeme will focus on expanding the Foundation’s international and national profile, as well as linking strategy to the execution of the Foundation’s projects. Stay tuned for her reflections on her trip abroad meeting with international colleagues, in our next issue of Top of Mind.

As always, I’m excited to continue to share the Foundation’s activities with you and I sincerely hope you’ll continue to engage with us on this important shift in the health care system. A shift to recognizing family caregivers, and supporting them in the important role they play as key partners in our health care system.

Today The Change Foundation is excited to announce four community partnerships poised to make positive impacts on the experience and interaction family caregivers have with Ontario’s health care system.

Through Changing CARE, partnerships in London, Huron and Perth counties, Cornwall and Toronto will develop local supports, programs, and/or resources that address four thematic needs identified by caregivers and health providers: communication, assessment, recognition, and education.

“These four partnerships truly understand the needs of caregivers in Ontario today,” said Change Foundation President and CEO Cathy Fooks, “Each showed an astounding commitment and willingness to co-design new strategies, practices and initiatives with caregivers for the benefit of Ontarians.”

Each partnership was developed with caregivers in key design and decision-making roles, which will continue throughout the partnership. The partnerships are also intently community driven and engage a variety of organizations across health care settings and community services.

The partnerships moving ahead under Changing CARE bring important focus to different facets of the caregiver experience from a multitude of perspectives including different care settings, demographics, and geographic locations.

Changing CARE will consist of the following partnerships:

Connecting the Dots…Smoothing Transitions for Family Caregivers

Partner Organizations: Huron Perth Healthcare Alliance; One Care Home and Community Support Services; North Perth Family Health Team; STAR Family Health Team; South West Community Care Access Centre; Southwest Local Health Integration Network

Embrace

Partner Organizations: The Cornwall & District Family Support Group; Cornwall Hospital, Community Addiction and Mental Health Services

Location: Cornwall, Ont.

Through several new work streams, this partnership will develop practices with family caregivers to better support, recognize, and embrace their vital role in the recovery of their family and/or friend with addiction and mental health issues. Click here for more.

Improving CARE Together

Partner Organization: St. Joseph’s Health Care London

Location: London, Ont.

St. Joseph’s Health Care London will build on past learning and successes to further strengthen family caregiver partnerships in all its programs and services. This partnership will feature a number of activities and mechanisms designed to make impacts across the organization, including, communication resource toolkits, formal caregiver assessments and new education and support initiatives. Click here for more.

Cultivating Change: The Caregiver Friendly Hospital and Community Hub

Partner Organizations: Sinai Health System and WoodGreen Community Services

Location: Toronto, Ont.

Sinai Health System and WoodGreen Community Services are proudly partnering with family caregivers to fundamentally redesign the caregiver experience using the concept of the Caregiver Friendly Hospital and Community Hub. Click here for more.

Changing CARE partnerships will each receive a maximum of $750,000 per year for the next three years from The Change Foundation.

Starting in late January, four regional launch events will take place to celebrate and showcase each Changing CARE project.

The start of the winter season always brings tidings of joy, peace, and for some, relaxation. For many family caregivers, however, this can be start of an even more stressful period.

From providing emotional support to performing medical tasks, we know caregivers take on a host of roles and responsibilities, many of who also hold down paid employment. Add in the scheduling it takes to get together with family and the necessary adaptation to reduced hours from home care and other support networks, many caregivers may feel more stressed or isolated.

The situation can be even more difficult for young carers. Since schools close and various recreation programs take breaks for the December holidays, many young people may find themselves without their own support networks of friends, teachers, or other mentors.

It’s during this time of the year that the need for dedicated informal and formal caregiver support networks seems the most striking to me. Though pockets of promise exist throughout Ontario, we don’t yet have a consistent way to support and recognize caregivers across the province.

Some answers may lie across the pond. In October, I travelled to the United Kingdom, arguably one of the leading countries in terms of recognizing caregiver rights and developing supports. During my visit, I was astonished to see the simple and fairly easy types of caregiver support initiatives that were created on local, regional, and national levels—for example, Carers Passports.

Cathy Fooks speaking at CarersUK

Depending on the community or region where they’ve been developed, Carers Passports range from discount cards to passes for open visiting hours. Passports recognize who caregivers are in the health care system while at the same time connecting caregivers to a number of identifiable community supports. For organizations like Carers in Herts, carers passports leverage existing community institutions and businesses. To make initial contact and lessen the stigma that comes with seeking help, Carers in Herts uses local libraries as initial outreach posts and asks for caregivers to validate their passports by calling the organization. Once validated, the caregiver can use the passport as a discount card at local businesses, but have also had their information recorded by Carers in Herts for any further follow ups.

For this issue of Top of Mind, we share more our key findings from this recent visit. Most notably, we take a look the work organizations such as Carers UK and Carers in Herts have done to develop key caregiver support networks in our commentary article, written by Christa Haanstra, Executive Lead, Strategic Communications. We also take time to feature John’s Campaign, a grassroots social media movement in the UK with one simple and successful aim: giving caregivers the right to stay in hospital with persons with dementia.

Lastly, as this is our last Top of Mind for 2016, I want to wish you all a safe and happy holiday with your friends and family.

Big things are in store for 2017, including the announcement of our Changing CARE projects. I hope you’ll continue with us as we work to improve family caregiver experiences in Ontario’s health and community care sectors.

That’s been our mantra for just over a month now with the launch of our new funding initiative, Changing CARE. We’ve done the legwork, and we’re ready to take action in Ontario’s health and community care sectors.

This past week was our deadline for Expression of Interest submissions for those organizations interested in being part of Changing CARE. We had over 400 people tune in to one of four webinars and have now received over 70 Expression of Interest (EOI) submissions as a result—now it’s on to the review process. We heard from all parts of the system – family health teams, hospitals, LHINs and CCACs, and home and community care service agencies.

Similar to the PATH project before it, Changing CARE will bring family caregivers and providers together to spearhead innovative solutions that aim to improve family caregiver experiences in Ontario’s health and community care sector.

It’s on this note that our Top of Mind commentary piece makes a concerted call for better coordination of the various efforts being pioneered across Ontario aimed at family caregivers. At the Foundation, we’ve put a lot of work into better understanding the caregiver experience from the perspectives of caregivers themselves but also from front line staff and health care professionals.

Innovation, however, also needs to exist in policy and legislation, both in health care and in other environments. So, what action is being taken to support family caregivers on a policy front more broadly? To answer this question, we had Cayla Baarda, a Research Associate in the City of Toronto’s Urban Fellows Program and the Foundation’s summer Research Assistant, highlight three key legislative developments aimed at family caregivers.

Lastly, we also had the immense pleasure of providing eight young carers from the Niagara Region the opportunity to share their own caregiving stories in video format through a digital storytelling workshop. In the end, six decided to share their videos more widely and one of these young carers, 17-year-old Olivia Wyatt, is the focus of our latest caregiver feature written by Program Associate Catherine Monk-Saigal.

Stories like Olivia’s need to continue to be at the centre of any change in Ontario, especially as the health care system enters a period of flux. It’s also important to keep ourselves open to the new opportunities that might arise during this period and be willing to take actions that can lead to positive change.

In August, we announced details on our new funding initiative, Changing CARE. Since then, we’ve seen an overwhelming response from every corner of the Ontario health care environment. This is evidenced by the nearly 400 participants in our Changing CARE webinars throughout August and September, and the 70 Expressions of Interest submissions we received last week. Furthermore, this response underscores the fact that family caregivers are being increasingly seen as essential health care stakeholders who have a role and need support.

What we found interesting through our engagement work, however, was the common feeling of helplessness from both caregivers and health care providers. Caregivers often said they didn’t know where to go for information and support and health care providers often said they didn’t know where to send them. Changing CARE aims to change this dynamic as well as others.

As a start, we’ve published a number of key reports that are meant to be resources for the field. This includes A Profile of Family Caregivers in Ontario, our Caregiver Resource Hub, and our StoriesShared, Voices Heard reports which outline findings from both our caregiver and health provider consultations gathered during The Caring Experience Project. These resources on our website provide a concrete starting point for anyone looking to improve the family caregiver experience.

It’s well known that caregiver burden is a real issue facing Ontario and that distress levels are rising. This needs to change.

Through our work leading up to Changing CARE, we discovered four broad themes that caregivers experience – challenges related to communication, recognition, assessment, and education.

We’ll be funding up to three projects in support of innovative ideas to improve the caregiver experience. Future system transformation is clearly predicated on families providing support in all aspects of patient care – if we don’t start building system capacity to partner with them now, no one will be well served. Not patients. Not families. Not providers.

Just as we welcome a new season and warm weather returns, we at The Change Foundation (TCF) are feeling very energized as we move into new phases of our work.

Doing a deep dive into family caregiver issues through grassroots engagement and research has underscored for us just how imperative it is that we continue to focus on integrating and supporting family caregivers as a way to improve the patient and family experience.

At TCF, we believe that this mix of strong engagement and strong research also allows for a unique, more inclusive perspective on how change can be achieved in health care.

Look no further than the past six months as an example, which has seen us release a number of research publications, reach out to both family caregivers and health providers (click to learn more), and continue to share our knowledge at a number of conferences and stakeholder meetings. These kinds of activities are the crux of our approach to evolve Ontario’s health care sector.

Another good example can easily be seen with our Shedding New Light report series. Researched and written by family caregiver Sara Shearkhani, Shedding New Light offers a glimpse into Sara’s caregiving journey, and her struggle with evolving personal responsibilities. These reflections stand alongside a literature review on the stages of caregiving. Overall, the reports serve as important examples of how evidence and lived experience can be used to tell a meaningful caregiving story.

Although it’s encouraging to see evolving literature like this, the more we learn, the more we understand just how much work still needs to be done.

This is especially important from a policy perspective. In this issue’s commentary piece, Lori Hale and Stephanie Hylmar bring forward four key emerging themes for increased stakeholder consideration and action, as identified through The Caring Experience project. These themes are directly informed form our engagement with both family caregivers and Ontario’s health providers and serve as an important starting point for TCF’s next phase of strategic work.

Furthermore, at the launch of our latest report, A Profile of Family Caregivers in Ontario, we issued a call to action for ourselves for the next phase of our strategic plan. Coinciding with the release of that report, dedicated planning has started at TCF to develop the next round of funding opportunities and partnerships aimed at improving family caregiver experiences.

Now is the time for introspection for The Change Foundation to fully realize these opportunities. More importantly, it’s an added chance to ask ourselves how we can continue to be Ontario’s neutral sandbox for positive health care collaboration.

Whatever funding opportunities are developed, they will undeniably involve both family caregivers and health providers as equal partners, with a focus on creating made-in-Ontario solutions that will lead the way in improving caregiver and patient experiences in the province.

With this approach, we can continue to be the catalyst for change in Ontario health care.

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WHAT’S BEING SAID

Stephane is a young caregiver who assists with caring for his younger brother. Don has been caring for his wife since her diagnosis with early onset Alzheimer’s 5 years ago.
Hear from Stephane & Don on what their #caregiving experiences have been like: bit.ly/2VuxJCKpic.twitter.com/FfZTG9IqkE

Have you registered for our upcoming webinar on Including Caregiver ID initiatives as part of Family Presence and Open Visiting Policies in Ontario?
The webinar takes place on June 6th from 12:30-1:30 p.m. Register here: bit.ly/2Wuto3qpic.twitter.com/UTo09kDe1y

While 64% of #caregivers surveyed said they were happy to step in and provide care, 18% felt intimidated by what was expected of them.
Learn more about how caregivers feel about caregiving in our Spotlight on Ontario's Caregivers report: bit.ly/2TrwMe8pic.twitter.com/dl3dwlX8MQ

'Family presence results in better patient outcomes, it is that simple."
Are you looking to implement family presence or open visiting policy in our healthcare setting? Hear from those who do and their experiences in our latest report: bit.ly/2Wuto3qpic.twitter.com/pYCMRCBVqq

Be engaged. Sign up for our newsletter, Top of Mind, and let us keep you informed on what the Foundation is doing to influence positive change in Ontario’s health care system.

Looking for more information on Foundation projects? Contact us to find out how we’re informing positive change in Ontario’s health care system.

Promoting a positive evolution in Ontario’s health care system by engaging patients, family caregivers and health providers to explore contemporary health care issues.